In addition to its physical and emotional impact on women, endometriosis can also impact their male partners, according to a new qualitative study conducted by the George Institute for Global Health, New Delhi.
Endometriosis is a chronic, debilitating condition in women in which the endometrial tissue — the tissue lining the uterus — grows outside of the uterus, causing severe and life-impacting pain. The condition, which affects around 43 million women in India, can lead to worries about infertility in women, too. Endometriosis affects roughly 190 million girls and women in the reproductive age group across the globe.
The study included 21 women in the age group of 18-45 with laparoscopically confirmed endometriosis, recruited from private hospitals and infertility clinics based in Delhi-National Capital Region (NCR) and Assam, as well as the male partners of 10 of the women.
The findings of this study highlighted that all men reported that endometriosis affected their sexual lives, but not their relationships. Besides, they were aware of the pain their partners underwent during intercourse. According to the study, financial distress, including expenses incurred for fertility treatments and uncertainty regarding the future, were some common concerns among men.
It stressed the need to improve early diagnosis and develop impactful treatment options to reduce the impact of this health condition on women and their partners.
The George Institute for Global Health conducted the study in collaboration with partners from India — Population Council, Delhi; Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh; and ICMR-National Institute for Research in Reproductive and Child Health, Mumbai — as well as the University of Oxford, UK.
Endometriosis: A long-term challenge
Dr Vivekanand Jha, executive director of the George Institute for Global Health, shared that in India, several women’s health conditions have been neglected on the research front — and endometriosis is one such issue. Women with endometriosis also face heavy menstrual bleeding with tissue shedding, and the cycle between periods becomes shorter. Some could also have two periods in a month.
“Endometriosis, like diabetes, is a long-term condition with similar economic and social burdens. However, while diabetes and other such issues have become public health priorities, endometriosis has not,” said Preety R Rajbangshi, study author and senior research fellow at the New Delhi-based institute, while discussing the findings of the study at a stakeholder consultation meeting titled ‘Tackling Endometriosis Together to Improve Women’s Lives in India’. Dr Vanita Jain, professor in the department of obstetrics and gynecology, PGIMER- Chandigarh, added that endometriosis continues to be one of the most complicated gynecological conditions to treat and manage, largely because the pathophysiology of this condition is not yet known.
Normalization of menstrual pain leads to delayed diagnosis
The normalization of menstrual pain, lack of knowledge about endometriosis and insufficient access to gynecologists, especially for women living in rural or semi-urban areas are some reasons for the delayed diagnosis of endometriosis, showed the study. For example, most women participating in the study shared that they had started seeing symptoms as teenagers; however, it took 6.5 years on average to be diagnosed. Further, many women sought a concrete diagnosis only when they were planning to conceive. “The pain is normalized not just by the woman living with the condition and her family, but also a large section of healthcare providers,” shared Rajbangshi.
Impact of endometriosis on women
The study listed numerous ways in which the condition affects women with this condition. Researchers have pointed out that self-blame and self-harm are commonly seen in women with endometriosis. Rajbagshi shared that several women shared that while they visited healthcare providers and sought care for the pain, they were not diagnosed. Being forced to consult multiple doctors across specialties in an attempt to relieve the pain, difficulty focussing on education and work, needing to take several sick leaves, missing opportunities at work, and being unable to pursue their dreams and career goals are some common struggles they face.
Impact of endometriosis on partners
The study explores the similarities and differences in the way endometriosis affects women and their male partners, with the effect on women being significantly more. Rajbagshi said, “Their partners also go through significant emotional distress, which they may be unable to share with others. Some also shared complications with intimacy, the financial burden of treatment and the need to take on additional roles and responsibilities on the home front.”
Takeaways
Findings of a study conducted on women living with endometriosis to understand the impact of the debilitating chronic condition on them as well their partners and families has found that it causes significant emotional distress in both. The normalization of menstrual pain and lack of knowledge about endometriosis have led to delayed diagnosis in many cases, the study stated.
